Friday, December 11, 2009

Home Sweet Home!




TB is a cruel illness. Button coughed like an old man on 60 cigarettes a day, his chest rattled as he breathed, he had no appetite and at nearly one year old weighed under 11lbs. He was a very sick little boy. The day after we arrived home we took him to see our GP, who arranged to have him admitted to our local hospital the following Monday. So we had one blissful weekend of normality - well, if waking every hour to check he was still breathing and never letting him out of our arms counts as "normal"!

We arrived in the Paediatric ward of the hospital and met the wonderful Dr G. Little did we know what an important part of our lives this dedicated, caring woman would be. She arranged for a battery of tests, and gave him a thorough examination. immediately she noticed that he had high muscle tone in his right leg, especially his ankle, and that he was seriously behind in his developmental milestones. He could not sit up unaided, and could barely turn from his front to his back. She wanted to be sure of the diagnosis of TB, and to rule out any other serious illnesses (particularly HIV and Cystic Fibrosis).

He had a CT scan of his brain which showed that he'd had a bleed at some point, probably in-utero - he had Cerebral Palsy. That was a dark day - up until then I had managed to convince myself that with the right medication, and some physio Button would be "perfect" - but as she spoke those words to me, I knew our lives were altered forever. I was the proud mama of a special needs child.

Dr G decided that Button's needs could be best served by a more specialised hospital - so after a week we were transferred to Crumlin Children's Hospital, under the care of the Infectious diseases team. It was still vital that the TB was confirmed, and as he'd been on treatment, the normal tests would not work. it was necessary to do a biopsy on one of his lymph nodes. His weight was still a huge concern too, as he was hardly eating or drinking. So a nasogastric tube was inserted. This was the only procedure I left the room for - I had been there for every other needle, examination and blood test, but i just couldn't do this one. When I returned to the room, he was propped up on his pillow, quite calm and relaxed, but I lost it. Now he looked sick.

As I looked at his little face, with those huge brown eyes making fleeting eye contact with me, I thought of all he'd been through to get to this point. And I allowed myself to fall completely, irrevocably and totally in love with him. If ever there was a child who needed someone in his corner, it was Button and if ever there were a set of parents ready to do what was necessary for their child, it was Mr Taz and I.

Game on!!

12 comments:

  1. wow what an amzing blog, i feel as i was right there with you, you are an incredible woman and button is an amazing strong child xx

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  2. Amazing blog Taz, can feel every step with you on your journey. What tremendous courage you have shown in your unwaivering devotion to your beautiful boy. xxx

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  3. What an amazing blog, you are an incredible mum to your beaufiful boy.

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  4. God poor Button really was put through the mill! I know that whenever any of mine were ill I'd have gladly taken their place so they would have to go through it. You must be an incredibly strong woman as well as a fab mother! xx

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  5. I'm in the corner with you with my boxing gloves on...you are a gifted storyteller xxx

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  6. fab blog again i am waiting with bated breath for the next installment as usual i read all the time and if this was a book i wouldn't be able to put it down

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  7. You have a fantastic talent for this, I feel like I am standing beside you as this happens (sniffling too). A big hug for Button, he is an amazing child, as are his parents:) Jen

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  8. fab blog, i feel like im beside you all the way, you really write from your heart, love it

    mandie xx

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  9. I arrived here just surfing.
    Congratulations on Your nice site and best wishes from Italy

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  10. Catching up with all the blogs,great again,serious i think you need to think about a book.Funny we also had a fab Dr G she became a big part of out lives to alas she had to leave us and go to another hospital i was heart broken Katy

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  11. Oh Taz... your poor Button. He couldn't have better people in his corner than his mum and dad!! What an incredible journey. xx Jazzy

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  12. Amazing blog, Taz - you should really write a book! You and Mr Taz are both really strong considering all poor Button has been through, he is really lucky to have you as his parents.

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